our last words

posted on February 24, 2015 by Merry-Jennifer

There is a memory that sneaks up on me at unexpected times, usually in the quiet moments, while waiting alone for an elevator or on my walk in to work in the mornings. Or, just before I fall asleep at night, the memory jerking me to full awareness and heart-piercing pain. It shoves its way into my mind, and I’m helpless to stop it.

* * *

I am back in the hospital’s emergency room, standing at the foot of my father’s bed as the ER physician tells me he may need to shock my father’s heart to bring it out of the rapid and unstable rhythm it has adopted. The heart monitor alarms over my father’s head. The heart rhythm itself might not be worrisome, but his blood pressure is dropping as the heart races, and this has everyone nervous and hovering nearby. The nurses have wheeled the crash cart to just outside my father’s room. I notice it – a hulking, red box on wheels, filled with everything needed to revive and resuscitate a crashing patient – and I feel nauseous.

First, though, the doctor will try adenosine to break the rhythm. “His heart may stop temporarily,” he tells me. “There could be a period of asystole, and he could have chest pain.”

I know this, as I have used this medication before, when I was an internal medicine resident treating a patient with supraventricular tachycardia (called SVT for ease). The hope is that the adenosine will break the rapid heart rhythm, setting it back into its normal beat. But the ER doctor isn’t sure if Dad’s heart rate is due to SVT or to atrial fibrillation. He thinks this will help him figure it out.

I nod my assent. “I won’t look at the monitor,” I say, lying. I squeeze my father’s hand and smile reassuringly. Dad can’t really hear anything being said, so he looks to me for an idea of what’s going on. I am aware that he’s watching my reactions. The nurses wheel the crash cart in and begin making preparations. I step out of the way and let the doctor move closer to the bed.

I can hardly breathe as the first dose of adenosine is pushed into the IV. I find that I cannot watch my father, and despite my intentions, I cannot watch the monitor either. I focus on breathing. I squeeze my father’s foot. He is wearing white athletic socks, and his foot feels soft and warm under my hand.

The first dose slows my father’s heart but the fast rate immediately returns, and a second dose is ordered and administered. There may have been a third dose after that.

My father’s blood pressure is lower, but the rate has slowed some, which makes the doctor happy. He is not happy about the blood pressure, though. It may not be SVT, the doctor tells me. Maybe it’s atrial fibrillation. The nurses leave the crash cart in the room and hang a bag of saline on the IV pole, connecting the tubing to Dad’s IV. Hopefully, the blood pressure will return to more normal levels as his veins fill with fluid.

Later, he has stabilized some. The heart rate is high, but not as high as before. It is acceptable. His blood pressure is still on the low side, but not low enough that he needs medications to improve it. He will be moved to the Intermediate Care Unit when a bed is cleaned. Not long now, we are told. He is thirsty, and I have gotten him a styrofoam cup filled with ice water. Using a bendy straw, he drinks most of the water and then sighs heavily, closing his eyes. He leans back in the flimsy ER bed, shifting his weight, getting as comfortable as the bed will allow. I can tell he wants to doze off.

It’s a Friday night, and it finally feels like he is comfortable enough for me to leave him for the night. And I trust his nurses.

“I’m going to head home to Sam and the kids, Dad,” I say, loudly, into his ear. His hearing is terrible and has only worsened over the past year. Hearing aids don’t even work any more. I’ve resorted to inadequate sign language over the past several months.

He opens his eyes, as if noticing for the first time that I am there. He nods and reaches for my hand. I take it. His hand is clammy and damp, but his grip is strong. I rub my thumb over his thumb, the one that is shorter. Several years before, he cut the tip off of it with a wood saw, while making a cradle for my daughter, his only granddaughter.

I lean down and kiss his forehead, letting go of his hand. He smells like the nursing home. As I walk out of his room, I pause at the glass doors and look back at him to wave.

He looks more alert and says, “Do they think this is serious?”

“I’m not sure, Dad,” I say, telling the truth. I reassure him that the doctors will monitor him closely and probably do some more tests. I tell him that I’ll be back in the morning, that I will find him in his new room. I’m not sure how much he has heard, but he seems to understand. He nods and settles back on the bed, raises a hand in goodbye.

“I’m sure everything will be okay,” I say, smiling. He does not say anything more but smiles back at me. I walk away.

* * *

It is the memory of this last exchange that brings me to instant tears, even an entire year later. Those were his last words to me, and I had told him that everything would be okay. The stroke that would kill him within the week happened that night.

I can’t help but wonder if I could have prevented it in some way. I know the answer to this, I do. But this thought – this question – fills my heart with dread in the quiet hours of the night, before I fall asleep. When these thoughts happen, I question myself. I question everything.

I think the adenosine was to blame. I wonder if I should have stopped the ER doctor from performing the bedside cardioversion without first having a cardiologist involved, or without first ordering an echocardiogram to look for a clot sitting in my father’s heart. Was there an alternative that could have been – or should have been – attempted? Or was this stroke destined to be, either then or at another time? Is the adenosine to blame? Or is nothing to blame?

I torture myself with these questions. And just as I know that I am not responsible – and gosh, how egotistical it is of me to even think I could control the events of that evening – I can’t help but have these thoughts.

February 27 will be one year since my father’s death. I just want it to be another day, a routine and ordinary day.

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49 Responses to “a crisis and a decision”

Oh Merry-Jennifer, I am so sorry to hear this news. We keep having the “parent” conversations as ours are nearing that time when conversations need to be in place. In place or a plan, just in case. I have a heavy heart for you. Be strong, you know what is going to be best. xo

My heart goes out to you and your family. We went through something similar with my grandparents (and your father sounds uncannily like my grandfather, flirting with the nurses). Dementia is a terrible, terrible thing and I hate the way it steals the essence of a person. Thinking of you all xxx

I can’t imagine how hard it was to open up and share this with us. And to have to witness this is something I can’t even fathom. But thank you for your honesty and for putting this down on your blog… Life is often ugly and difficult and we all have to find ways of getting through it. Even a key lime cheesecake offers such comfort.

I’m so sorry. I wish I had some advice or really anything that could make this easier or better for you, but I don’t. I’ve watched loved ones slip down this same slope, and it’s so heartbreaking. Know that we’re here if you need us, and if all you need is a cup of coffee and someone to talk to I’m here for that as well.

My heart aches for you. My father had dementia. My mother cared for him until he could no longer stand or walk without help. There are no easy answers, as it is an awful disease.
I cherish my memories; some are from his time in the nursing home.

Hurt me to read this. Toward the end of his life, around 92 years old, my grandpa also suffered with dementia and we had to also make the choice to get him into a nursing home. I also relate to the comfort you find in baking. Stay strong – sending positive thoughts your way all the way from Toronto, Ontario, Canada.

When I was in grad school, my grandmother who had Alzheimers and had always lived with my parents, got considerably worse. My folks went on vacation and without them knowing, I took her to the ER and abandoned her there, which was the only way she could get admitted to a facility that would care for her appropriately (because she had no money.) She thought she was just staying at the hospital. She didn’t feel abandoned that night, which helped. My parents came back from vacation and to be honest, were relieved. They couldn’t have done it, too much guilt, but they had been going crazy with it all for years.

So doing that for your mom is a gift. Being strong for her is a gift. I can’t imagine how much she hates doing this, and how incredible it is to have you there. I’ve heard those words about wanting to die, being left to die, wanting to go home, and it just stays with you. I can still hear her begging to come live with me. It sticks to you. I can feel in your words how hard it is.

That said, I see my mom sliding now at 82, as my grandmother did. She’s so negative and mean and depressed and kinda delusional at times. I know I’ll have to do the same thing as with my grandmother. I’ve been feeling a little alone about it all, like I’m the only kid looking at her mother wasting away and all that it means. Thank you for sharing your heart-breaking story. I guess we are all in it together.

I am so sorry……..as much as we hear about this, I don’t think our hearts are ever quite prepared when it happens to our parents. Thank you for being so open as I know it helps those struggling with similar issues. Prayers to your family.

As I started reading your beautiful post my eyes welled up and I’m still dabbing at tears. You’ve described my parents too and yet my mom won’t make this decision. I’m scared I’m going to lose them both. Wish I could give you a hug.

I’m so sorry, Merry-Jennifer! My grandmother moved in with us when I was teenager when her dementia meant she needed full-time care. Let’s just say that was not the easiest time of our lives. I don’t know how my parents got through it. But they did. Your parents are so lucky to have you. So so lucky. A big hug to you.

MJ,
I can imagine the pain and heavy heart you have. You are in my thoughts and prayers.
We faced this difficult decision with my grandparents, one by one. We were so worried about Grandpa taking care of Grandma. Grandpa’s biggest fear was that something would happen to Grandma ‘on his watch.’ He took her to the hospital one night, and she passed away the following day. Though her passing was a knife in the heart to him (and all of us), he said he was comforted greatly by the fact that she was in a hospital when it happened—where she had any help she needed. So yes, I’m telling you that asking for help with the care of a loved one is a good thing. For your family, for grandma, even for grandpa.
I’m so sorry your heart is being pulled like this.
I’ll be thinking about you.
xo,
Christina

I always love your words, but today, I hate the reasons that you had to write them. My thoughts are with you and your family. Hang in there, I can’t imagine how tough the next few days and weeks will be, but I know you’ll make it through.

Oh, my dear daughter. How eloquently you put this. I am so guilt ridden that I cannot put into words how this has devastated me. You do not need this burden. Thank you and I also have to thank your brother, Clay. He’s been such a big help. Dementia is worse than cancer, I believe. Thank you so much for supporting me. Your mother…Macaroni Mama.

I’ve known you since you were are little girl and your dad has always been a pillar of strength to me. Dementia has robbed me a giant of a friend and also robbed me of my very best friend, my mom. Mom is in a wonderful place in Gainesville where she has found a comfortable place to spend each day. Their support of me and kindness to Mom helps me deal with the quilt I took on myself. No one can imagine how difficult all of this is.

I’m so sorry my friend. You all are very brave to go through a very tough decision like that. It made me cry. And I pray that you find solace in all of this. Soon. You are definitely in our thoughts and prayers. Hugs.

I could feel your pain in the post you wrote. My heart aches for you, your dad and your family. The last sentence made me cry. I so hope everything works put in some way for all of you! Sending you hugs from SoCal with lots of sunshine!

I am so sorry for your unhappiness, but remember that the dementia isn’t your father, and as hard as it is to hear it all it’s just his illness talking.
It’s such a hard place for you all to be – you have my prayers for comfort and peace

I’m so sorry to find that your family is going through this. My paternal grandmother suffered from Alzheimer’s and it’s just an unfair and heart wrenching situation all the way around. Hoping for it to get easier would be silly…I know it likely won’t. So I won’t hope for that, but I will fervently hope that you can make peace and do the best you can every day. That’s really all that anybody ever can. My heart and thoughts are with you.

Bearing witness to our parents’ aging is heart-breaking. The only comforting thought I had regarding the process, was that it’s the natural of order of things….if the tables were turned and your dad had to usher you out of this world it would break his heart even more. Thoughts and prayers are with you.

My heart and prayers go out to you. We faced the same issue with my wonderful mom. It turned into a very hard, very long, very sad goodbye. Keep your chin up (which is what my mom would always tells me as a kid) and know that there is lots of love for you and your family.

I have been in your shoes. Only for me, it was my mother, not my father. And, for me, it was more than dementia…it was Alzheimer’s…and I chose to care for her in our home. It was my decision, but it was a wrenching 3 years. It was exhauting, frustrating, tragic and I never felt I was doing all that I could, even though I know now that I was. After her death, I needed another 3 years to get over it. I got every germ that walked by…shingles, pneumonia AND depression; it took a huge toll on me physically and spiritually.

What your family has chosen to do is a terribly difficult decision, but a good one. It’s good to put your mother first…she is among the living. You need to support her and care for her since she will respond to your attentions and heal. Your dad is being cared for, and you are spending lots of time with him which is difficult but good. But, at the end of the day, you are able to go home and BAKE to keep you sane.

Don’t feel guilty; you are doing the best for everyone concerned. Dementia is a family affair; it affects every member of that family and each person must be cared for and loved at this most difficult time.

Oh, I’m so sorry to hear. We recently faced this in our family, and my grandmother was devastated when she realized that she would no longer live with her children (they used to take shifts…monthly). It was just too much to care for her, and she gets visited quite often from her kids/grandkids now. Sending prayers your way…I’m so sorry!

I am very sorry Merry that your family is going through such a rough time, its very difficult to see parents grow old.. We all do our best to take care of your parents but at one point- it is best for everyone to put them at nursing home in order for them get proper care. I hope the nursing staff at the facility takes good care of them.. its hard, extremely hard decision but I hope your father gets good care over there. Take Care

Damn, that really sucks. I want to swear more than that for you. For your family, for your Dad. Quell any guilt, continue to hold his hand. Continue to bake and nurture yourself and encourage your family to do this same. He is loved. You are loved.

I am so sorry to hear this. I work with a company that does in home care for seniors and our specialty is working with seniors with dementia. We have a DVD available for families coping with this disease. It is so hard to watch the children and the spouses go through this. If you would like a copy of the DVD, please reach out to me. It discusses the stages of the disease and may prepare you for what your dad will go through. We work with a renowned Dementia expert, Teepa Snow. I wish you the best.

I think of the statement “Do no harm” and how this statement ripples out in how it affects the patient… and the family. The longer I have considered this statement, the more difficult it’s been to realize what that must look like for doctors, especially to figure out not only how to do no harm, but do less harm if that is the option presented. My uncle had early onset dementia. I saw the changes happen in him and it is incredibly hard to make the best decisions like the one you and your family made- to Do No Harm. Can I suggest to you also a wonderful poetry book by poet Carol Frost called “Honeycomb” – her mother had dementia and this book chronicles that well. Hang in there MJ. Sending hugs to you and your family.

Know that you are not alone, many of us have you and your family in our thoughts and prayers. There is no right or wrong here. You will feel the guilt, no matter what you decide. Hope that knowing you are not alone will help to ease that feeling for you. Say your prayers and know HIS guidance through this process.

Merry, I think it’s not a coincidence that I stumbled across your site today as I was following a trail of food blogs and saw this blog recommended. I expected to find some yummy recipe, but instead started reading your post that felt so eerily familiar. Although it’s my mom for me, the circumstances are very, very much the same. My sister and I, too, have kept it really pretty private. I guess in a way to honor my mom, but also in a way to not talk about it. I’m not sure if that’s been the healthiest, but it’s been how it’s been. 🙂 So, I really appreciated seeing your openness and vulnerability. I hope baking will continue to be a calming refuge for you. I will enjoy checking out your recipes and your writing. Praying for peace for you and your family.

I’m so glad to come across another doctor-foodie on the blog. My heart goes out to you, I’m sure it is a difficult phase, especially to be on the other side of the consult! My prayers for you and family.

God be with you and your family, it must be the hardest thing to watch the person you love slip away while they are still alive..Having had the experience of losing someone who was young..you come to appreciate what you have and draw strength from that loss. BE and DO from you heart and dont let others tell you how to deal with this. You are the one living it, and remember its OK to fall apart.. ACCEPT .xx

I’m not a regular visit to your site, so this post whilst not from this month is a surprise to me. I’m so sorry for the challenges you’re facing, I can only imagine the heartache in dealing with his illness and now the issues surrounded with getting him the help you all need. Taking care of family includes taking care of yourself in the process, ensuring you are all around and well enough to care, but I’m sure that offers you little enough comfort. Sending you all the virtual hugs and support that can fit in one comment.

I called your Mom last night and she told me about Truett. I was very sorry to hear the news. He was a great guy and we always enjoyed their company. Somehow Ryan found your blog site. How do you find time?
Your Mom sounded a bit stressed and seemed to be having a tough time adjusting and caring for her Mom and Clay.
Please know your family is in our hearths and prayers and I am sorry I did not know to attend the funeral.
We have fond memories of being with your family and going to the UK alumni derby parties with them for many years.
Ken & Lorraine